Back in the winter of 2010, Meg was an ordinary seven year old girl. She loved to draw, play sports, dance and hang out with her big brother Jake. She also had a keen eye for fashion, spending a good amount of time each day planning what she would wear. Meg was always smiling; she was a very happy and content young lady.
Meg’s parents noticed she was falling down every so often, mostly around the house. They also noticed that she was not quite herself when playing sports and started to complain of her hearing in her left ear. The same week her parents had scheduled an appointment at their Pediatrician’s office, a couple of Meg’s teachers had said they noticed her symptoms as well.
Meg and her parents went to get an MRI after the Pediatrician said she was noticing some neurological deficits. Meg’s parents would learn that she had a brain tumor and that she needed to be transported to Duke Medical Center immediately. Later that same evening, a Doctor communicated the diagnosis –a Diffuse Intrinsic Pontine Glioma (DIPG).
DIPG has been called the worst news a Doctor could give a parent. It is a tumor that grows among the nerves within the brainstem. Because of this, surgery is not an option as the brainstem is responsible for vital functions such as breathing, swallowing and movement. It affects approximately 200 children each year. The prognosis for Meg was that she would live for nine months to a year.
After a few surgeries to place a shunt and port, Meg started out on the standard course of treatment –six weeks of radiation and chemotherapy. Children typically respond well to radiation in that, the tumor shrinks and their quality of life is greatly improved. This normally lasts for months but eventually the tumor comes back. Research has been unable to find an effective treatment for the recurrence of the tumor.
Meg and her family set out to live life to its fullest and that is what they did after Meg’s treatments. Some of Meg’s adventures included: a trip to the beach, a Disney Cruise and a trip to New York. Her favorite adventure was a trip to Los Angeles where she starred on Kimora –Life in the Fab Lane. She was also adopted by the Duke Women’s Lacrosse Team, attended a Taylor Swift concert in style, had a fashion themed birthday party and met Paul Teutul from Orange County Choppers.
While Meg was living out her dreams and adventures, Meg’s parents knew the clock was ticking. In September 2010, they received the news they feared. Meg’s tumor had starting progressing. Meg began a clinical trial at Duke and after a few months was pulled off as her symptoms continued to progress. Desperate to try to get some relief for their daughter, the family traveled to Rhode Island for a second round of radiation. They would spend the three weeks just prior to Christmas there for treatment. Through Christmas and New Years, Meg seemed to be about the same. In the first week of January 2011, Meg complained of a stomachache. Meg had come down with an infection, common in children whose treatment lasts as long as Meg’s did. Three days later, Meg passed away in the Hospital with her Mom and Dad holding her. She was not in pain and spared the prolonged agony that this tumor produces in so many cases.
Meg’s journey was one in which no child should ever have to endure. Yet, she did so all the while keeping her grace, humor and beautiful smile. She never complained or asked –why me? Her parents asked themselves –how can we honor Meg’s memory and spirit properly?
While in Rhode Island, Meg was treated to a shopping spree by a Foundation organized to make children happy while battling serious illness. The Founders have a daughter who passed away with the same type of tumor. As part of her shopping spree, Meg was given the opportunity to brighten another patient’s day with some gifts. Meg said that this made her feel real good inside.
With that, Meg’s Smile Foundation was born. Meg’s parents wanted to channel the generosity and energy from all of their family, neighbors and friends to putting smiles on the face of children with serious illness.
There are opportunities throughout the year to get involved with the Meg’s Smile Foundation. You can also go online at www.megsmile.org and donate with a message or anonymously, as well as see the children that the Foundation has helped by bringing them their own smiles.
